pediatric palliative care › 2014 › dr. carmen johnson... · pediatric palliative care...

Pediatric Palliative Care

Preconference SHPCA Clinical Day 2014

Saskatoon, SK May 13, 2014

Carmen L. Johnson MD, CCFP, ABFP, AAHPM, AAPM, ABAM, ABRPM (Pain Medicine)

Medical Director Palliative Care Services, Regina Qu’Appelle Health Region

ELNEC

End of Life Nursing Education Consortium

Pediatric Palliative Care

Pediatric Palliative Care

Children are living longer with

complex chronic medical conditions.

Multiple acute and chronic health

crises create significant challenges for

the child and family.

Pediatric Palliative Care

Children in US Population:

– 0 – 18 years

– represent 25% population

– 0‐20 years = 27.6% US population

Pediatric Palliative Care

5 million US children are disabled

Children represent 3% all deaths

1/2 of childhood deaths - first year

1/2 infant deaths (0‐1 yr) 1st month

Pediatric Palliative Care

4 Diagnostic Groups for Pediatric Palliative Care

1) Children with conditions where treatment possible, but

may fail – cancer

2) Conditions where premature death likely - intensive

symptom management can provide good quality of life for

long time (CF, MD, HIV)

Pediatric Palliative Care

4 Diagnostic Groups for Pediatric Palliative Care

3) Progressive conditions in which treatment is exclusively

palliative from diagnosis and may extend over years

(Batten’s, mucopolysaccharidosis, CJD)

Pediatric Palliative Care

4 Diagnostic Groups for Pediatric Palliative Care

4) Condition not progressive, but renders child vulnerable to

serious complications so that life expectancy is actually

very short (hypoxic ischemic encephalopathy, spinal cord

injury)

Pediatric Palliative Care

Challenges in Pediatric Palliative Care

• relative rarity of childhood death

• epidemiology of childhood death

– rare syndromes

– defects

– abnormalities

Pediatric Palliative Care

Challenges in Pediatric Palliative Care

• interpersonal dynamics

– professional

– familial

Pediatric Palliative Care

Unique challenge to health care providers.

Interdisciplinary family-centered care -

integral part of the symptom management

for a chronically ill child.

Pediatric Palliative Care

Overview

Basic principles of pain assessment

infants, children, adolescents

Focus on pain in palliative care

Key Points

Comprehensive, age appropriate pain assessment essential to adequate pain

relief.

Many barriers which impede pain assessment and treatment.

Key Points

Collaboration with interdisciplinary

colleagues - optimum use of drug and non-

drug interventions.

Treatment of pain in palliative care includes

attention to suffering.

Objectives

At the completion of this module, the

participant will be able to:

1. Identify barriers to adequate pain relief

in palliative care.

2. List components of a thorough pain

assessment.

Objectives

At the completion of this module, the

participant will be able to:

3. Describe pharmacological and non-

pharmacological therapies used to relieve

pain.

Pediatric Palliative Care

Symptoms in Dying Children:

89% suffered “a lot” or “ a great deal” from at

least one symptom in their last month of life.

- tx (76%) successful for pain: 27%

- tx (65%) successful for dyspnea: 16%

Suffering pain more likely when physician

not involved in care.

Pediatric Palliative Care

Symptoms in dying children:

89% suffered “a lot” or “ a great deal” from

at least one symptom in last month of life.

- pain

- fatigue

- dyspnea

Palliative Care In Children

Cancer Pain Relief and Palliative Care

in Children

“unlike adults children cannot independently

seek pain relief and are therefore vulnerable,

they need adults to recognize their pain

before they can receive appropriate

treatment”

WHO, Geneva, 1998

Key Nursing Roles

Assessment

Child / family advocacy

Pharmacological treatments

Key Nursing Roles

Non-drug treatments

Child / family teaching

Assessment and Management

Identification as "terminal" may limit care

Assess symptom onset, severity &

effect on quality of life!

Diagnostic testing - Not ‘if’ but ‘why’

Symptoms & Suffering

Determine priorities of the child/family.

What are the child’s/family’s’ goal of care?

Responsibilities are to benefit the child

(beneficence) and to refrain from harm

(non- maleficence).

Symptoms & Suffering

Understand that symptoms create

suffering and distress.

Use an interdisciplinary care approach.

Symptoms & Suffering

View parents as experts in their child’s care.

Explore the role of the extended family,

school, and community.

Symptoms

Hematological

Psychological

Spiritual

Pain

Neurological

Respiratory

GI symptoms

Fatigue

Impact of Pain

‘What is it like to have a child with pain?’

Unendurable

Sense of helplessness

Sense of total commitment

Unprepared/not knowledgeable

Horrible/frightening

No pain in heaven

Dussel et al., 2010

Myths Related Pain Management

Risk of respiratory depression

Addiction

Child that is sleeping/or playing does not have

pain

Presence of pain indicates worsening of

disease or approaching death

(Goldman et al., 2012; Hockenberry & Wilson, 2010; Layman-Goldstein & Sakae, 2010;

Pasero & McCaffery, 2011).

Pain Management Concepts

Children same as adults:

• tolerance

• physical dependence

• addiction

• pseudo‐addiction

Pain Management Concepts

Children same as adults:

• scheduled

• breakthrough

• incidental

• procedural

Facts About Childhood Pain

Opioid addictions are rare.

Repeated exposure to painful procedures leads to increased anxiety and perception of pain.

Studies have shown that children as young as 3 years old can use pain scales.

Carter et al., 2011; Collins et al., 2011;

Goldman et al., 2012; Hockenberry & Wilson, 2010

Children Will Deny Pain If:

Treatment is associated with SQ or IM inj

Previously told to be brave

Don’t understand pain can be treated

Don’t understand questions about pain

-vocabulary issues

Children Will Deny Pain If

Fear medication side effects

Worry about not being discharged to home

if in pain

Believe that the tubes won’t come out until

they stop taking pain medications

Medications taste yucky

Cognitive Stage (Age) Concept of Illness Concept of Pain

Preoperational thought

(2 to 7 years)

Phenomenism:

Perceives external, unrelated, concrete

phenomenon as the cause of illness

(e.g., “being sick because you don’t feel

well")

Contagion:

Perceives cause of illness as proximity

between two events that occurs by

“magic” (e.g., “getting a cold because

you are near someone who has a cold”)

Conceives of pain primarily as physical,

concrete experience

Thinks in terms of magical

disappearance of pain

May view pain as punishment for wrong

doing

Tends to hold someone accountable for

own pain and may strike out at person

Concrete operational

thought

(7 to 10+ years)

Contamination:

Perceives cause as a person, object, or

action external to the child that is

“bad” or “harmful” to the body (e.g.,

“getting a cold because you didn’t

wear a hat”)

Internalization:

Perceives illness as having an external

cause but as being located inside the

body (e.g., “getting a cold by breathing

in air and bacteria”)

Conceives of pain physically (e.g.,

headache, stomachache)

Able to perceive psychologic pain (e.g.,

someone dying)

Fears bodily harm and annihilation (body

destruction and death)

May view pain as punishment for wrong-

doing

Formal operational thought

(13 years and older)

Physiologic:

Perceives cause as malfunctioning or

nonfunctioning organ or process; can

explain illness in sequence of events

Psychophysiologic:

Realizes that psychologic actions and

attitudes affect health and illness

Able to give reason for pain (e.g., fell

and hit nerve)

Perceives several types of psychologic

pain

Has limited life experiences to cope

with pain as adult might cope despite

mature understanding of pain

Fears losing control during painful

experience

Module 6

Table 3: Children’s Developmental Concepts of Illness and Pain .

Source:

Hockenberry, M., Wilson, D. (2010). Wong’s nursing care of infants and children (9th ed.). St. Louis, MO: Mosby. Reprinted with permission.

Barriers to Pain Management

Nurses Pain Management Practices

• 132 Children

• Pain levels average 1.63 (0‐5 scale)

• 50% reported mod to severe pain

• 117 reported pain

Barriers to Pain Management

74% received analgesia

Nurses gave 37.9% of available morphine dose

Nurses gave 54% of available codeine dose

VanHalle VC et al J Pediatric Nurs 2004; (19)1:

40‐50

Developmental Responses to Pain

Young Infants

Generalized body response of rigidity or thrashing

Loud crying

Facial expression of pain (brows lowered and

drawn together, eyes tightly closed, mouth open

and square)

Developmental Responses to Pain

Young Infants

Demonstrates no association between

approaching stimulus and subsequent pain.

Pain can cause decrease in appetite, not able

to be consoled, self-limitation of activity/or

lack of affected extremity.

Developmental Responses to Pain

Older Infants

Localized body response with deliberate

withdrawal of stimulated area.

Loud crying.

Developmental Responses to Pain

Older Infants

Facial expression pain and /or anger (some facial

characteristics as pain but eyes may be open)

Physical resistance, especially pushing the

stimulus away after it is applied.

When in pain, maybe restless or overly active.

Developmental Responses to Pain

Young Children

Loud crying, screaming.

Verbal expressions of “Ow,” “Ouch,” or “It hurts”

Thrashing of arms and legs.

Attempts to push stimulus away before it is applied.

Uncooperative; needs physical restraint.

Developmental Responses to Pain

Young Children

Requests termination of procedure.

Clings to parent, nurse, or significant person.

Requests emotional support, such as hugs or

other forms of physical comfort.

Developmental Responses to Pain

Young Children

Restless and irritable with continuing pain.

Behaviors in anticipation of procedure.

More receptive to distractions or

explanations/medical play.

Developmental Responses to Pain

School-Age Children

All behaviors of young child, esp. during painful

procedure - less in anticipatory period.

Stalling behavior - “Wait a minute” or “I’m not

ready”.

Muscular rigidity - clenched fists, white knuckles,

gritted teeth, contracted limbs, body stiffness,

closed eyes, wrinkled forehead.

Developmental Responses to Pain

School-Age Children

Children listen carefully to what is said around

them.

Have more comprehension & knowledge of

the disease than recognized by adults.

Developmental Responses to Pain

School-Age Children

Explanations of procedures are desired.

Medical play—gives a sense of control for the

child.

Use of child-life specialists are helpful.

Developmental Responses to Pain

Adolescents

Less vocal protest.

Less motor activity.

More verbal expressions, such as “It hurts”

or “You’re hurting me”

Developmental Responses to Pain

Adolescents

Increased muscle tension and body control.

Body image is extremely important

May exhibit overconfidence, stoicism,

embarrassment - hide pain.

Specific Populations

Neurocognitive Impairment

Pain experience

Pain indicators

Effect of uncontrolled pain

Assessment

Knowing child

Recognizing patterns

Specific Populations

Cancer Pain

Disease, treatment, & procedural related

Chronic Non-Malignant Pain

Sickle cell disease, diabetes, rheumatoid

arthritis, HIV, cystic fibrosis, neurological

degenerative diseases

Assessment of Pain

Self-report

Behavioral

Physiologic

Proxy report

Use of scales

Assessment of Pain

1) Ask about pain regularly. Assess pain

systematically.

2) Believe the patient and family in their

reports of pain and what relieves it.

3) Choose pain control options appropriate

for the patient, family, setting.

Assessment

4) Deliver interventions in a timely, logical,

and coordinated fashion.

5) Empower patients and their families.

Enable them to control their course to

the greatest extent possible.

Pain Experience History

CHILD FORM

PARENT FORM

Tell me what pain is.

What word(s) does your child use in regard to pain?

Tell me about the hurt you have had

before

Describe the pain experiences your child has had before.

Do you tell others when you hurt? If yes,

who?

Does your child tell you or others when he/she is hurting?

What do you do for yourself when you are

hurting?

How do you know when your child is in pain?

What do you want others to do for you

when you hurt?

How does your child usually react to pain?

What don’t you want others to do for you

when you hurt?

What do you do for your child when he/she is hurting?

Is there anything special that you want me

to know about you when you hurt? (If yes,

have child describe.)

What works best to decrease or take away your child’s

pain? Is there anything special that you would like me to

know about your child and pain? (If yes, describe.)

Source:

Children’s International Project on Palliative/Hospice Services (ChIPPS). (2000). Section 3: Management

of pain and other symptoms. Compendium of pediatric palliative care (p. 3-3). Arlington, VA: National

Hospice and Palliative Care Organization. Reprinted with permission.

Pain Experience History

Pain Assessment Tools

Pre-verbal / Nonverbal

FLACC

Pain Observation Scale

Modified Objective Pain Score

Non-communicating Children's Pain Checklist

(NCCPC)

FLACC Scale

Category Scoring

0 1 2

Face No particular expression or smile Occasional grimace or frown,

withdrawn, disinterested

Frequent to constant

quivering chin, clenched jaw

Legs Normal position or relaxed Uneasy, restless, tense Kicking, or legs drawn up

Activity Lying quietly, normal position, moves

easily

Squirming, shifting back and forth,

tense

Arched, rigid or jerking

Cry No cry (awake or asleep) Moans or whimpers; occasional

complaint

Crying steadily, screams or

sobs, frequent complaints

Consolability Content, relaxed Reassured by occasional touching,

hugging or being talked to, distractible

Difficult to console or comfort

FLACC Scale

Each of the five categories (F) Face; (L) Legs; (A) Activity; (C) Cry; (C) Consolability is scored from 0-2, which results in a total

score between zero and ten.

Source:

From The FLACC: A behavioral scale for scoring postoperative pain in young children, by S Merkel and others, 1997, Pediatric Nurse 23(3), p. 293-

297. Copyright 1997 by Jannetti Co. University of Michigan Medical Center. Reprinted with permission.

Pain Assessment Tools

Verbal

FACES Pain Scale-Revised (FPS-R)

OUCHER

VAS (Visual Analog Scale)

Verbal Report Scale

Total Pain

Physical Pain

Pain due to disease location

Other symptoms (ie, nausea)

Physical decline & fatigue

Total Pain

Spiritual Pain

Religious/faith, anger at God

Meaning of life & illness

Why me?

Why my child?

Total Pain

Psychological Pain

Grief, depression

Anxiety, anger

Change in appearance

Total Pain

Social

Relationships with family/friends

Role in the family

Financial problems

Social PainPsychological

Pain

Spiritual Pain Physical Pain

Total Pain

Adapted from:

Mehta, A., & Chan, L.S. (2008). Understanding of the concept of “total pain”: a pre-requisite for pain control. Journal of

Hospice and Palliative Nursing, 10(1), 26-32.

Total Pain—An Interactive Model

Pain versus Suffering

Influenced by existential distress, fear of dying and grief

Affects QOL

Pain in Dying Children

90% of children dying of cancer

experience pain or other

symptoms

Nearly 50% had pain relief

Inadequate pain relief hastens

death

Around the Clock Dosing

Opioid Medications – Scheduled

Maintains stable analgesic blood levels

Designed to control baseline pain

Provide PRN doses for breakthrough pain

Stay Ahead of Pain

Individualize Based On:

1) Level of pain

2) Prior experience with opioids

3) And desired activity level

Stay Ahead of Pain

Frequently assess pain

Adjust treatment plan prn

Pain crisis - rapid titration to comfort

Complementary/alternative methods

Patient/Family Education

Address fears/misconceptions

Choose words carefully

-Opioid (not narcotic)

-Medication (not drugs)

Patient/Family Education

Physiology of pain

Pain assessment and use of scale

How pain medications work

Potential side-effects and management

When to call doctor/nurse

Non-Pharmacological Pain Management

Visualization/guided imagery

Deep breathing

Massage

Heat

Positioning

Physical therapy

Meditation

Reiki

Hypnosis

Aromatherapy

Music

Hydrotherapy

Consult

-child life

-social work

-rehab

Distraction

Involve parent and child in strong distractors.

Involve child in play; radio, tape recorder, record

player; singing, rhythmic breathing.

Have child take a deep breath and blow it out

until told to stop (French, Painter, Coury, 1994).

Have child blow bubbles to “blow the hurt away.”

Distraction

Have child concentrate on yelling or saying

“ouch” by focusing on “yelling loud or soft as you

feel it hurt; that way I know what’s happening.”

Have child look through kaleidoscope and ask,

“Do you see the different designs?”

(Vessey, Carlson, McGill, 1994)

Relaxation

Infant or Young Child:

Hold in a comfortable, well-supported position -

vertically against the chest and shoulder.

Rock in a wide, rhythmic arc - rocking chair -

sway back and forth – do not bounce.

Relaxation

Repeat words softly, such as “Mommy’s here.”

With Older Child:

Take a deep breath and “go limp as a rag doll”,

exhale slowly, ask child to yawn (demonstrate if

needed).

Pretend to float like a balloon.

Cutaneous Stimulation

Apply heat or cold before giving injection

Apply ice to opposite of painful area (e.g., if right

knee hurts, place ice on left knee)

Electric vibrator

Cutaneous Stimulation

Massage with hand lotion, powder, or

menthol cream

Includes simple rhythmic rubbing

Use of pressure

Visual Distraction

Describe Pictures

Helps with brief period of pain - few minutes - hour.

Pretend you are in picture. What would you do?

Count the number of items in picture.

Visual Distraction

Describe Pictures

Name each item in picture.

Name the colors.

What is happening in picture?

Make up a story about picture.

.

Route of Administration

Oral is not always least traumatic

toddler/early childhood

Flavor of medications

Crush meds after verification with pharmacy

(Carter et al., 2011; Goldman et al., 2012; Hockenberry & Wilson, 2010; Loizzo et al., 2009; Pasero

& McCaffery, 2011; Walco & Goldschneider, 2008):

Route of Administration

Avoid rectal

No ‘SHOTS’

“If it would hurt you, it would hurt them.”

Role of the Nurse in Pain Management

Identify obstacles

Best practices

Advocacy

Education

Nurses

Responsibility

Summary

Children’s pain is under recognized and treated. Pain must be assessed and managed consistently. Interdisciplinary management. Requires trust and cooperation. Approach the child with the same respect you would an adult.

Golden Rule "If it would hurt you, it hurts them"

References

Hockenberry, M., Wilson, D. (2010). Wong’s nursing care

of infants and children (9th ed.). Copyright 2010 by WB

SAUNDERS CO (B) /ELSEVIER.

Jacox, A., Carr, D. B., Payne, R. et al. (1994).

Management of cancer pain: Clinical practice guideline

No 9. AHCPR publication No. 94-0592. Rockville, MD:

Agency for Health Care Policy and Research,

U.S. Department of Health and Human Services, Public

Health Service.

http://www.jaoa.org/content/107/suppl_7/ES4.full

References

Goldman et al., 2012

Layman-Goldstein & Sakae, 2010

Pasero & McCaffery, 2011

Carter et al., 2011

Collins et al., 2011

Wolfe et al, NEJM, 342,#5, 2000

VanHalle VC et al J Pediatric Nurs 2004; (19)1: 40‐50

References

From The FLACC: A behavioral scale for scoring postoperative pain in young children, by S Merkel and others, 1997, Pediatric Nurse 23(3), p. 293-297. Copyright 1997 by Jannetti Co. University of Michigan Medical Center.

Mehta, A., & Chan, L.S. (2008). Understanding of the concept of “total pain”: a pre-requisite for pain control. Journal of Hospice and Palliative Nursing, 10(1), 26-32.